Andy O’Dell has spent most of his life suffering. He just didn’t know why – until recently.
After years of visiting doctors for severe fatigue and abdominal cramping, the 22-year-old from Jupiter – along with his mother, father and younger brother – was diagnosed with celiac disease.
The disease, also known as celiac sprue, is a digestive condition caused by an intolerance to gluten proteins found in all forms of wheat, barley, and rye. If untreated, it can lead to vitamin and mineral deficiencies, osteoporosis, infertility and central and peripheral nervous system disorders.
Three million Americans, one in every 150, are believed to suffer from celiac disease – 10 times more people then previously thought, according to a National Institute of Health panel that reviewed the disease last month.
The condition, which affects people of all ages, can be diagnosed by a blood test or biopsy of the small intestine, but patients often suffer for years because physicians don’t test for it or misdiagnose it, most commonly as irritable bowel syndrome. The cause of the disease is still unknown, but researchers have found evidence that links the disease to genes regulating the body’s immune response to proteins.
“We have a very effective treatment – a gluten-free diet – but if physicians don’t recognize when to test for the disease, patients are going to suffer needlessly.” said Charles Elson, chairman of the NIH panel.
But many processed food products are not labeled for their gluten content – reading only “modified food starch,” meaning it may contain any one of a number of glutens.
Congress is considering a bill that would require food manufacturers to label products containing ingredients that trigger six common allergies. Those products would include gluten. The legislation would require the common name of the ingredient to be printed.
The bill has 56 co-sponsors, including Rep. Robert Wexler, a Democrat from Delray Beach. The bill passed the Senate in March and was recently approved by the Health Subcommittee of the House Energy and Commerce Committee. A vote by the full House is expected sometime this week.
Often misdiagnosed as ADD
O’Dell had such a severe case of the disease that he spent 12 to 14 hours a day sleeping. When he was awake, he had little if any energy – so bad he almost had to drop out of college, said his mother, Karen O’Dell. After several unsuccessful visits to their family doctor, Karen took Andy to an allergist who conducted a full battery of tests, leading them to find his gluten intolerance.
“It wasn’t so bad when he was in high school because I was cooking for him and he ate lots of fruits, vegetables and meat,” said O’Dell, a registered nurse. “But when he went to college he was living in a fraternity house where he ate pasta, pizza and beer all the time – all of which are full of glutens.”
After learning about her son’s condition, O’Dell went on the Internet and learned that celiac has been connected to attention deficit disorder (ADD), which her younger son suffers from, as well as eczema, which she herself had as a child.
Mary Schluckebier, executive director of the Celiac Sprue Association, said that in some cases children may be misdiagnosed with ADD, when in reality they suffer from celiac disease.
“The symptoms can be very similar,” Schluckebier said, citing fatigue and lethargy as common signs of the disease in children.
O’Dell took this information back to her family doctor and asked for the whole family to be tested for the disease.
“My doctor actually had the nerve to tell me we probably didn’t have (celiac) because they had never heard of the disease,” she said. “Well, I told them that clearly they did have someone with it – my son.”
Further tests confirmed that the entire family had the disease, including O’Dell’s husband, John, who had been treated for years for irritable bowel syndrome.
After seven months of being on a gluten-free diet, Andy O’Dell said he feels like a new person. He moved out of his college housing so he could have his own kitchen and cook food that follows his special diet. He said he really likes the gluten-free cookies because they don’t taste that different from regular cookies.
While he really misses eating pizza and having a cold beer, he said that giving up some of his favorite foods has been easy compared to being sick all the time.
“(Celiac) affected my mind as much as it affected my body,” he said. “Since I’ve been on the diet my GPA has gone from a 2.75 to a 3.25 because I can actually concentrate.”
Mother and son do most of their shopping at health-food stores with special sections dedicated to gluten-free products. Some popular products include Amazon Frosted Flakes and Peanut Butter Panda Puffs, both of which are gluten free.
Nutrition S’Mart, a natural and organic supermarket located in Palm Beach Gardens, offers a gluten-free cooking class once a month where participants learn new recipes that provide them with ways eat “starchy” foods that would otherwise be eliminated from their diets. They learn to make pancakes, cookies, waffles, bread, pasta and even cakes out of alternative forms of flour – rice, potato, and soy flour.
With hopes of helping other families like the O’Dell’s learn about celiac disease, the Children’s Digestive Health and Nutrition Foundation and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition launched an educational campaign recently, to provide information to health care providers and parents.